Friday, 27 January 2017

It’s Cervical Cancer Prevention Week, so Louise
has been looking again at Edinburgh’s history of advocacy
and care reflected in our collections:

By their very nature, many archives tend to represent an ‘institutional’
view of the past, since it’s the history and accountability of organisations
(such as the National Health Service) that these archives are set up to
represent in the first place. For example, we have many, many records about
patients in the form of various registers, ledgers and case histories, but these
reflect hospitals’ aims in treating people and sending them out well again – case
histories are taken down by a doctor or clerk (not always verbatim), clinical
opinions are given on care and progress and the patient’s outcome assessed.
First-hand patient experiences, reactions and feelings are almost always filtered
through the clinical needs of the record and the voice of the physician – at least
in our older holdings. Luckily, we have a number of more modern collections
that reset this balance, conveying the direct experiences of those being cared
for – one of these being our Cervical Smear and Women’s Health collection (GD31).

As a result of publicised (and avoidable) deaths from
cervical cancer in the early 1980s, Lothian Health Board’s existing cervical
screening services were in extremely high demand – particularly since women
were not invited to attend regular screenings. In 1985, laboratory facilities
had a backlog of 10,000 un-read slides and froze the screening programme to
catch up. In response to public concern about this, Edinburgh District Local
Health Council and Edinburgh District Council Women’s Committee organised a
public meeting, and the ‘Cervical Smear Campaign’ was formed.

The campaign petitioned Lothian Health Board to lift all screening
restrictions and to demand a fully comprehensive service in Lothian and
Scotland, including regular tests with organised call-backs and treatment for
abnormal smears. Public support for the petition was massive in Lothian, Fife
and the Borders, with nearly 18,000 signatures. In May 1988, Lothian Health
Board introduced three-yearly screening for women aged 20 and over, a
computerised recall system, and automatic notification of all test results to
women themselves in addition to their doctors.

Cervical Smear Campaign video, 1987 (GD31/4/3)

The campaign became national as the decade went on. In
November 1987, a second petition was launched, demanding a full screening
service across Scotland. Campaign members also gave talks to hundreds of women
across the region and produced information leaflets and a video in the absence
of any other health education material, raising awareness and changing
attitudes towards cervical cancer within the general public, the NHS and the
media.

My favourite items in the Cervical Smear Campaign part of
the collection are undoubtedly these publicity materials – they show a real
grass-roots approach, giving straightforward and non-intimidating information
about women’s health:

Importantly, this key information was made accessible for
those whose first language was not English:

The same leaflet in Chinese (left) and Bengali (right) - GD31/3/1/2

As well as information generated by the Cervical Smear
Campaign, there’s also local and national information and discussion on testing
and attitudes to cervical cancer - for example, this Lothian Health Board 1988
leaflet, which echoes the imagery used in the earlier Cervical Smear Campaign:

Lothian Health Board leaflet, 1988 (GD31/3/7/1)

Debates around women’s
health and morality, still very much on the agenda today, are also reflected in this collected
literature. On the back page of a 1985 publication from the London-based Women’s
Health Information Centre (GD31/6/1), the moral assumptions involved in
abnormal smear results and cervical cancer diagnoses are explored. Since the virus that leads to cervical cancer is spread through sexual contact, the article reported women ‘already
distressed by a diagnosis of cancer… additionally humiliated by insensitive
questions about the number of sexual partners they have had.’ The author
describes women being ascribed responsibility for the sexual promiscuity of any
potential partners and being urged to keep themselves morally and physically pure
to remain cancer-free. In contrast, despite the increasing incidence in young
women in the 1980s, the article points out that cervical cancer ‘remains predominantly
a disease of poverty and old age’ – since working class women without a
bathroom at home and wives of men working in ‘dusty’ occupations (like mining,
working with machine tools and with certain chemicals) were especially
vulnerable. Regular testing, social change, health education and better environmental
working and living conditions – rather than cementing stigma and fear – were then,
as now, seen as the most effective health promotion.

If you’d like to know more about our collections around
women’s health in Edinburgh and the Lothians, get in touch.

It’s been a great privilege, though not one without challenges,
to get such a detailed look at the case notes, as these sorts of records are
not usually catalogued individually. It means that as well as seeing broader
trends in TB care, including the development of BCG vaccine
and antibiotic treatments, and getting a sense of how the hospitals functioned
(in the case of Southfield Sanatorium,
apparently not very well!), I’ve been able to see the stories of individual
patients.

﻿﻿

Correspondence from the Southfield Sanatorium series, bemoaning the poor state of the hospital prior to 1946.
(LHB41 CC/1 PR1.610)

Some of these stories have been very sad, such as the cat with TB, the child
who was kept in school (despite the usual recommendation for bed rest) so as not to be “made a drudge at home”, or the husband
who forced his sick wife out of the house she had been allocated to as a result of her illness. Others have been happier, including the many cases of patients making
a recovery.

Correspondence relating to some of the sadder stories revealed by the case notes
(LBH41 CC/2 PR2.1042, 3322, 4179 - click to enlarge)

One thing that comes clear is the stigma surrounding tuberculosis,
such as the patient from England who went to Southfield in order to avoid it
being known in their locality that they had TB. I’ve even seen a patient
threatening to sue the hospital for giving them such an outrageous diagnosis!

Some records tell us about the eagerness of the patients and their families to
get cured of the disease, and the anxiety faced by those who wished to avoid
it, while others show signs of refusal to comply with treatment. Over the past
eighteen months I’ve been able to see literally thousands of these stories, and
they are still throwing up surprises!

Extracts from case notes of patients who refused treatment or who wished to try other means of treatment
(LHB41 CC/2 PR2.1997, 2595, 6298)

As well as the catalogue, hopefully another great tool will
come out of the work we’ve done on this project, which will reveal the larger
stories which the case notes can tell. Last year, I made a successful bid for
someone to work on creating a data visualisation tool using data which can be
extracted from our case note catalogues. We’ve been tagging and indexing
information such as the patient’s gender, age, occupation, medical conditions
and treatments throughout the project, and the plan is that this will be put to
use to create fancy interactive graphs and charts which can tell the story of
the case notes in a visual form. Work on this project hasn’t started yet, but
I’m really excited to see what will come out of it!

While my work here has mostly been focused on the case
notes, I’ve also been lucky enough to learn more about some of the other recordsand objects
held by LHSA. It’s also been agreat
privilege to take part in other LHSA activities, including assisting Louise at
outreach events, attending conferences, delivering a presentation to
students on my old course, and even getting crafty and making some ‘zines last
month! I’ve really enjoyed working with such a wonderful team over the last 18
months, and I’ll definitely be reading the blog to keep up with what they are
getting up to!

As is LHSA tradition, we start off the new year’s blogging
with a quick look at the exciting things we have on the horizon…and then it’s
back to normal service with contributions from the LHSA team talking about the
collections and their work with them.

This month we’re starting off as we mean to go on by getting
involved in a couple of activities that will help make us a better archive –
first off by taking part in a workshop to revise the NHS Records Management
Code of Practice and secondly, by coming up with a plan of attack to help
inform NHS colleagues of the kinds of records we want to take. Both of which will
mean that the quality, quantity and regularity of transfers of records to us is
improved.

Our two Wellcome Trust-funded case note projects will finish
this year and we’ll be in a position to launch online catalogues, redacted as
appropriate of course! Aline finished cataloguing the Dott case notes a couple
of days ago - so we’ve already hit a significant milestone for the project - and Becky and Clair are well on the way to finishing the TB case notes.

We’re also looking forward to making more of the records
that we hold more accessible, with digital images going onto the University’s
online image platform in the not too distant future (http://images.is.ed.ac.uk/) and by continuing
the work required to put our catalogues into ArchivesSpace – the University’s
online catalogue for archive collections (http://archives.collections.ed.ac.uk/).

2017 is a big year for the Centre for Research Collections
with a major new project to rationalise, preserve and make more accessible the
collections in the University Collections Facility, which includes our material
held there. So we’re looking forward to getting involved and seeing the benefit
to our collections and the people that want to use them.

And as well as all that, we'll be providing our usual services - Alice and Louise will be answering your enquiries through 2017...it’s going to be a busy year so watch this space!

Lothian Health Services Archive holds the historically important local records of NHS hospitals and other health-related material.
We collect, preserve and catalogue these records and promote them to increase understanding of the history of health and for the benefit of all.

Use of images from LHSA collections

We can provide images from items in our collections, subject to various conditions. Images are provided for private study or non-commercial research, and cannot be used for other purposes unless you request and receive written permission from LHSA to do so.

If you wish to use any images that have been featured on this blog, please contact us at lhsa@ed.ac.uk and we will be happy to discuss permissions with you.